(Interview w/ daughter 9/ 2011. Oil in linen, 40 ins x 30 ins.)
Update 2021
I have not had success reconnecting with this subject's daughter to get an update. I wanted to check-in and see how she is feeling about her dad's illness and death 10 years later. When I interviewed this subject's daughter, she requested anonymity. The family was struggling with the the fallout from grief, managing a difficult illness, and losing income after the primary breadwinner's death. The family needed privacy and space to heal although this man's daughter was determined to get her father's story out about his horrible treatment at the hands of the US healthcare system. Whether this subject's daughter would still want anonymity is a question I will ask when I track her down.
This passage from the 2011 interview with the subject's daughter still haunts me.
"Freaking out," the subject called insurance companies for individual coverage. They thought he was joking since he had lung and brain cancers.
The Affordable Care act banned insurers' practice of denying insurance to people with preexisting conditions. This subject needed to buy an individual policy well before healthcare reform happened. He couldn't. His lung and brain cancers were conspicuous preexisting conditions listed in his medical records and grounds for denying him a single policy (before the Affordable Care Act prohibited preexisting condition discrimination).
The subject's daughter said, "He felt he worked his whole life and paid insurance," She quoted her Dad as saying. "I did everything right. I worked hard, sent kids to school, paid taxes, kept trying to work even when ill."
The subject ultimately died from congestive heart failure leaving behind many IOUs. He was sick and unable to make money. He had only just become eligible for Medicare benefits after turning 65. He died soon after -- too late to enjoy the relief from having to scramble for health insurance.
Art As Social Inquiry was still new when I painted this portrait. I had no idea what I was getting into. I didn't have a researcher's brain. I never thought I would spend hours -- years, really -- learning all the facets of the US hybrid public/private healthcare system. All I did was ask people what was happening in their lives with insurance. I was blown away by the rampant suffering people experienced trying to get healthcare. I could not look away.
It took me years to understand HIPAA, old Medicaid rules (before Medicaid Expansion), Social Security Disability Insurance, and on and on. I was like my subjects -- just swinging my arms in the dark trying to grab onto something to help me understand how so many people ended up in dire medical predicaments. It was all so complicated. I felt overwhelmed. This subject's sister set me straight. She worked for Medicaid. She understood our fragmented healthcare system. Our conversation made me realize how much more studying I had to do.
This subject's travails happened before the Affordable Care Act (ACA) included a provision for Medicaid expansion. The new healthcare law also made provisions for very ill, uninsured people like this subject who needed health insurance before the new online insurance marketplace launched in 2014.
My first portrait stories were a couple of paragraphs long. I didn't know what to ask. My latest in 2021 is over 5,000 words. I don't fumble anymore. I've circled the subject of US healthcare so many times over the years. The terminology resurfaces so often with every go-around like weeds in a sidewalk's cracks.
I paint subjects half-in and half-out of life when they die prematurely because accessing healthcare is a struggle.
Artist Note (from 9/2011 with 2021 additions )
The subject's daughter sent this note. "Everyday I am comforted when I look at my Dad's portrait, it has helped me quite a bit with the anger I have about all he went through. And it has taught me that I can channel that anger in a positive way to make a difference."
Her dad's healthcare story is harrowing. One day we're going along living life. The next, we're trying to go back to work a week after brain surgery to keep the job-based insurance.
~
In 2012 I stood in front of the US Supreme Court in Washington DC with this subject to bear witness to what happens when working people get sick, lose their employer-sponsored insurance, become uninsurable (before the Affordable Care Act), and scramble for healthcare. (I wasn't the only one at the Court that day bringing attention to an issue.)
This man worked through cancer treatments to keep his insurance. He had a grand mal seizure at 62. He tried to go back to work a week after brain surgery. He couldn't. He lost his insurance, rationed oxygen. He and his family worked every angle to get health insurance before healthcare reform happened with some hits and misses.
The following story is from a September 2011 interview with the subject's daughter.
(from a 9/2011 interview w/ daughter)
Construction Chief Estimating Officer, Insured through Job, then Uninsured, then Medicare Insured. Deceased, Age 65
The subject died on June 14, 2010. President signed the Affordable Care Act into law on March 23, 2010. The law appropriated $5 billion for the Preexisting Condition Insurance Pool beginning July 1, 2010 until January 1, 2014.
All too late for this subject.
He was a husband, father and grandfather. He worked in the construction industry for 40 years
He was always good about getting check-ups. In 2005 he had his lungs x-rayed as part of an annual check-up . The film showed an anomaly.
The insured subject got a biopsy from which he suffered complications, a collapsed lung. The results were not good. He had stage 3 lung cancer. He endured two rounds each of chemotherapy and radiation.
The subject's daughter said an earlier x-ray had been taken but the report had been misfiled. "...his cancer had not spread as much. It took them over a year to see that report in his chart, with cancer spreading the entire time, even though it was marked by the radiologist for follow-up at the time the first x-ray was taken."
The subject worked the entire time he was ill. His employer tried to accommodate him on days he wasn't feeling well. Even with insurance, the subject had a lot of out-of-pocket expenses. The insurance company would not pay for the newest anti-nausea medication. The pills were too expensive. The subject never filled the entire prescription. He could only afford to buy a few pills at a time.
The subject worked throughout his cancer treatments. He needed income and health insurance. Chemotherapy halted the cancer growth, but the subject would always have cancer because he could not tolerate surgery.
The subject's doctor recommended a PET scan as the best way to see the presence and severity of cancer. The insurance company denied coverage for the test. The subject was able to get a PET scan after an appeal but that process took about a month. The PET scan showed lung cancer a year after treatment but all other parts of the body were cancer-free. The subject was 60 years old.
Two years later in 2007, the subject suffered a grand mal seizure . He was 62, still working and insured. The subject was able to have brain surgery. He tried to return to work a week after brain surgery. (Daughter believes he wanted to keep his income and insurance.) His employer was scared. The subject "did not look good." His employer was concerned the subject would have a seizure on the job. The subject was let go. The family feels he was forced to retire.
Losing his job devastated the subject . His family had no other income.
His daughter said, "The brain surgeries changed his personality. He went from joking and positive to angry. How was he going to survive to 65 when he would qualify for Medicare?"
~
The subject went from earning six figures to getting temporary disability payments. He did not qualify for California's Medicaid as it was in 2007. The subject's sister works for Medicaid and offered this info in 2011 when I interviewed the subject's daughter. "The federal regulation allows home ownership, up to a certain amount of equity. I don't know the reason for his denial, though I suspect it would be that he had to have a Social Security disability determination in order to get Medicaid (which is difficult to get, and very timely), and the income limit could not be more than 300% of the federal poverty level income, which changes yearly, but in 2010 was $2022/mo. There is another criteria he would need, and that is requiring a nursing home level of care."
The subject now had the additional cost of paying for his health insurance premium in full from his former employer. He could continue getting the employer-based insurance under COBRA but he would have to pay for it himself.
The subject borrowed from every person in the family including his aged parents who were in their eighties. The subject was one of seven siblings. His daughter believes the borrowing came to six figures to pay for COBRA insurance, mortgage, line of credit, living expenses and medical bills the health insurance did not cover.
COBRA insurance would run out after 18 months. Employers are only required to allow former employees to buy insurance through their group plans for 18 months. Employers are not required to pay for it.
"Freaking out," the subject called insurance companies for individual coverage. They thought he was joking since he had lung and brain cancers. "He felt he worked his whole life and paid insurance." The subject's daughter quoted her dad as saying, "I did everything right. I worked hard, sent kids to school, paid taxes, kept trying to work even when ill."
The subject found himself uninsured for a short period after COBRA insurance through his former employer ended. The subject conserved by stretching his oxygen while he and the family tried to figure out a way to get health insurance. They managed to get medicine abroad during this time.
A friend suggested the subject incorporate. As a business he could buy a group plan. The subject had been continuously insured for so long through his employer, and then through COBRA that he was able to form a company and meet the requirements for continuous coverage under HIPAA laws.
The family formed a company. It was legitimate although the company was never meant to make money. The family needed some kind of entity that would qualify for employer-sponsored health coverage. Employers' workers were not subjected to the same medical underwriting rules as an individual looking to buy a single policy. But the insurers could charge dearly for the group plan.
The family made jewelry and bracelets to sell at fairs. The subject borrowed to pay the $2400/month insurance premium through the group plan. The premium was exorbitant but the insurance coverage allowed the subject to get his oxygen, anti-seizure, cancer and other medications which kept him alive for a year until he qualified for Medicare at age 65.
The subject expressed great relief when he reached Medicare eligibility age. His daughter believes her father was happy to have health insurance and not have to pay so much for it. A few months after qualifying for Medicare the subject started moving very slowly and swelling up.
The subject died from congestive heart failure leaving behind many IOUs. He used the borrowed money to survive financially after becoming ill and unable to work.
~
A NOTE FROM SUBJECT’S DAUGHTER
One thing that I want to emphasize is that our broken health care system failed my dad at the start of his illness. I brought up that he was so good about getting check-ups, but that it took some time for him to find out about his chest x-ray showing cancer.
That is relevant to the story because at the time the first x-ray showing cancer was taken, his cancer had not spread as much. It took them over a year to see that report in his chart, with cancer spreading the entire time, even though it was marked by the radiologist for follow-up at the time the first x-ray was taken.
Somehow in the process, the report just got filed without the doctor (or anybody) noticing it. It wasn't until my Dad went back to the doctor much later that the doctor saw the first x-ray.
After another x-ray showed masses in his lungs, the doctor went back through the chart and finally saw the original report.
When they looked back at all the info, we could clearly see the x-ray itself was marked (mass circled on the x-ray). The doctor’s office had billed my Dad’s insurance for the appointment and diagnostic testing. So it's not like they could say they got the report late, it got lost, or anything like that. The report got back to the doctor''s office from radiology and however their process worked, for us it feels like the billing was higher priority than the review of the report.
Who knows what happened? All we know is the report got filed without review or anybody doing any follow-up. Consequently, my Dad was not diagnosed until the cancer was at stage 3. It may have been a different story if the cancer had been caught at an earlier stage, but we''ll never know.
My dad was so smart and so funny even after he got diagnosed with lung cancer (but before brain cancer). He had cute little jokes he’d do – one was that he would tell every nurse who ever helped him, “Don’t tell the other nurses, but you’re my favorite.” And he loved the wildly inappropriate. If he was watching TV and wanted something from the kitchen, he would look at you with a sad face and say, “Can you get me some ice cream? I have cancer”…then stick out his bottom lip. It was so bad but so funny.
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